Please read this inspriring article about Ella, a little girl diagnosed with chronic lyme disease at age 7 and share with loved ones to raise awareness on prevention and treatment of lyme disease. Every effort must be made to protect and reduce the population of ticks with control programs such as our Mosquito Control Spray, as well as proper tick checks after spending time outdoors, and early detection and treatment of lyme symptoms. For a full version of this article please see the Poughkeepsi Journal.
“Mommy, my knee hurts.” It all started there.
At the Buss household in Webster, a suburb just outside of Rochester, her mother Jamie Buss orchestrates the visits, the calls, the round robin of scheduling doctor’s visits, medications, and tireless research that comes with being the mother of a child who suffers from chronic Lyme disease.
Ella was diagnosed with chronic Lyme disease in January 2016 when she was 7. Since then, Buss, her husband Mike and their two other children Tyler, 13, and Lucy, 7, have struggled with the realities of the disease.
Nearly two and a half years later, Ella, now in the fourth grade, continues to battle the disease. There’s the constant pain she lives with and varying symptoms that surface without notice. When the pain ignites, the Busses have had to pick her up from sleepovers. Before her daughter’s diagnosis, Buss’ knowledge of Lyme disease centered on prevention versus diagnosis and treatment.
Buss calls her daughter’s diagnosis a “complete surprise.”
She continued, “it just wasn’t on our radar. Lyme education in Western New York is lacking. We know enough to check for ticks. We are campers, we hike, and we tick checked before. We’ve pulled ticks off our other two children, but we never found a rash or ticks on Ella.”
For a while, the disease was a mystery. A year before Ella was diagnosed, she suffered from severe headaches and joint pain. For a few days, it was too painful to walk and her parents carried her. Doctors originally thought it was juvenile arthritis. With a round of blood work, she was diagnosed with Lyme disease.
Treatment and cure for Lyme disease is often easier when diagnosed earlier. In Ella’s case, doctors believed she had the disease a year before her diagnosis.
Buss doesn’t mince words when talking about the impact the disease has wrought on her daughter and the family.
Ella takes antibiotics and supplements daily, and her mother said she is in “some form of pain every day.” Chronic Lyme disease requires long term antibiotic therapy, according to The International Lyme and Associated Diseases Society.
For a while, she had regular bloodwork done every few weeks. The symptoms, which range from severe headaches and fatigue to adverse reaction to loud noises, can also vary.
The “Jell-O legs” will resurface from time to time where her legs give out on her. She stayed on the main floor of the house for a week.
She’s had to sit out from gym and read a book in the hallway, and when the lunch room was too noisy, ate lunch separately. Luckily, Buss said, “she could bring a friend, because it’s very isolating.
“She can’t just be a kid and even when she can be a kid she’s still got pain she’s managing. She’s doing a lot silently,” Buss said.
Ella’s school, including teachers and classmates, have been supportive and are aware of the situation.
The disease has been a financial burden as it isn’t covered by health insurance. The family has spent nearly $7,000 out of pocket on treatment to date, Buss estimates. Blood testing at a Lyme specific testing lab can cost upwards $500. At least twice a year, the family travels to Rhinebeck to see Ella’s doctor who specializes in Lyme disease. The Busses have researched alternative treatment, and just started CBD or Cannaboid treatment for pain management.
But the couple also strives to give Ella as much normalcy as can be afforded. She hangs out with friends and attends birthday parties and sleepovers. She plays hockey and lacrosse, which Buss believes has helped control the pain. This year, she has missed one and a half weeks of school, compared to third grade when she missed 40 percent of school days. Many children with Lyme disease are home-schooled.
But the symptoms are also unpredictable to where the family has had to leave a restaurant with a flare up.
“My 13-year-old, after watching Ella have an episode this winter, he asked me if she could die from this. This was not a conversation I was prepared for,” Buss said. “We said it’s rare, but it’s very possible.” She pauses: “Do I think Ella is going to die? No, I don’t. It’s very trying on the family because they can see her in pain.”
In June, Ella celebrates her 10th birthday and one of her wishes is “more people understood how I was feeling and that there were other kids I could talk to about Lyme.”
Ella continued: “I want people to be really careful when they’re outside. Wear long pants in the woods and change your clothes when you get home. And always check for ticks, so you don’t get Lyme like me.”
Help us share Ella’s story, and educate and prevent the spread of lyme disease. Please contact us for more information about protecting your yard, pets and family.